Understanding Brain Death

Legislation to establish “brain-related” criteria for death has uniformly confounded irreversible cessation of all functions of the entire brain with death of the human person. Much of the confusion has come from widespread misunderstanding of how the word “death” has been used and what it has meant. Cessation of all functions of the entire brain, whether irreversible or not, has not been linked necessarily to total destruction of the brain or to death of the person.1

All general criteria used as standard up to 1968 developed from the intention to make sure that a person who is still alive will not be treated as if dead. On the contrary, the new criteria are intended to prevent someone from being treated as alive when already dead. The new criteria are intended not only to decide as soon as possible when someone is dead, but among other options to clear the way for the excision of vital organs-action which, if a mistake has been made, is certain to kill the still-living patient. Since any criterion nowadays must subserve organ transplantation as well as all other purposes, any new general criterion of death must be at least as certain as the older ones, since a mistake here would be lethal. Yet, the new criteria are far less certain than the older ones, they are not merely uncertain but certainly wrong in principle.

If there is an irreversible loss of all functions characteristic of the brain, must we say the brain died, i.e., been wholly destroyed? (“Destroy” is used in its primary sense: “to break down or disintegrate the basic structure of,” to disrupt or obliterate the constitutive and ordered unity of.”2 Nowhere in our writings or in this presentation does “destruction imply abruptness or physical violence. For the brain, “destruction” implies such damage to the neurons that they disintegrate physically both individually and collectively.) The converse, of course, is obvious: the total destruction of the entire brain does imply irreversible cessation of every kind of brain function.

In any case in which all functioning of the brain has irreversibly ceased, destruction of the brain and death will follow fairly quickly unless rigorous therapeutic action is taken. However, when proper supportive action is taken, such an irreversible lack of brain function might well last for a long time before the patient would begin to suffer destruction of brain tissue and die.

In such circumstances, one would certainly not be free to treat a patient as dead. So long as we are dealing solely with cessation of function, we are dealing with a living patient. If, further, he happens to be dying, by this very fact he is not yet dead. The new criteria introduced further confusion through “irreversibility.” Irreversibility as such is not an empirical concept and cannot be empirically determined. Both destruction of the brain and cessation of its functions are in principle, directly observable; such observations can serve as evidence. Irreversibility, however, of any kind, is a property about which we can learn only by inference from prior experience. It is not an observable condition. Hence, it cannot serve as evidence, nor can it rightly be made part of an empirical criterion of death.

Recently, the public has been informed that babies born with the congenital anomaly known as anencephaly, are being used for vital organ transplantation.3 Baby Gabriel was delivered in Canada. At birth he breathed without assistance. Nevertheless, he was intubated and then transferred to Loma Linda, where no candidate could be located to receive the organs. Therefore, Baby Paul, known to have an abnormality of the heart (hypoplastic left heart syndrome which is usually lethal) but not due to be delivered for several weeks, was delivered prematurely to take advantage of the available organ.

The use of anencephalic babies for transplantation is not new. As early as 1963,4 it was reported that organs were being taken from anencephalic infants. In 1966,5 doctors made an unsuccessful attempt to transplant a heart from an anencephalic infant (18 months before the widely publicized transplant by Christiaan Barnard).

Most organs for transplant are obtained from victims of head trauma, including automobile and motorcycle accidents, and gunshots to the head. Not many infants fall into these categories. Furthermore, it has been estimated that there is a need for 400-500 hearts annually, as well as 500-1000 livers. Capron6 wrote, “The need is real.” If this is true and accurate, why did Baby Paul have to be delivered prematurely? Eleven other infants with anencephaly were admitted to Loma Linda. After one week when either no suitable candidates for transplant could be found or the baby did not fulfill Loma Linda criteria for brain death, the ventilator was discontinued. Capron wrote, “The initiative comes from surgeons who are developing the techniques for infant transplants, but parents also…, as they search for some meaning and comfort in the face of the death of their newborn.” In spite of this and the prediction of need, recipients for organs were not found at Loma Linda, thus that program has been discontinued.

What happens to anencephalic infants who do not receive ventilatory support? Forty percent live longer than 24 hours; thirty-five percent are still alive on the third day; and five percent are still alive on the seventh day.7 Baby Angelina lived 11 1/2 days. Her parents took her home from the hospital and cared for her, including feeding her by tube. Her father stated, “Angelina was beautiful. She had beautiful black hair. She added so much to our family.” (patient of author)

It has been suggested that there should be a separate category of human-“living but brain absent,”8 i.e., non-person. Legislation was introduced in California to modify the Uniform Determination of Death Act (UDDA). The UDDA has two categories for death, either 1) or 2), and the legislation would add, or 3) an individual born with anencephaly is dead. Other attempts at legislation were introduced in New Jersey and Ohio to modify the Uniform Anatomical Gift Act.

Let me shift now to cite examples of what has been happening in the field of organ transplantation. In Billings, Montana, a 2-year-old boy was admitted to the hospital, a victim of child abuse.9 He was moving and breathing. An attempt was made to intubate him but he resisted too much. He was given a large dose of morphine, but still he resisted too much. Then he was given a large dose of phenobarbital, but he continued resisting too much. Finally, he was paralyzed with pancuronium, which eliminated all resistance to intubation. The criteria for brain death in that community included recording brain waves on two separate occasions. Also, it required that no drugs be present that could interfere with the test. Brain waves were recorded only once and at the time the determination of brain death was made, a therapeutic -level of phenobarbital was still in his blood. He was pronounced dead and taken to the operating room where his kidneys were removed for transplantation. Details of this situation are known because of the prosecution and trial of someone charged with child abuse and murder.

In Charleston, South Carolina, a 16-year-old girl suffered a gunshot wound to the head.10 The paramedics started an IV and transported her to an emergency room. At the time of admission she was moving and breathing. She was intubated and then taken to the X-ray department. A CAT scan of her head showed the bullet inside the skull. The ventricles were not enlarged, compressed, or distorted in any fashion. No major blood vessels were hit. An EEG was not done. In less than two hours she was pronounced dead. During this time she was given 7,000 cc of fluid. (This is an amount normally required over about three days. Ordinarily, with injury to the brain, fluid administration is kept to a minimum to minimize the swelling of the brain.)

She was taken to the operating room where she was paralyzed. An incision was made in her abdomen, her diaphragm was cut, then the aorta and vena cava were cut across and both kidneys and spleen were removed. The ventilator was stopped; 14 minutes later her heart stopped. She didn’t breathe when the ventilator was stopped, but then again, this was impossible after she had been paralyzed and her diaphragm cut. At autopsy there were no pictures and no slides of the brain. The autopsy was done by a forensic pathologist at the same hospital. Details of this case are known because the person who shot this girl was charged with murder.

When someone is diagnosed as being brain dead, generally there are four options: 1) keep alive, 2) “pull the plug, “3) organ transplantation, and/or 4) research. Consider the irony of being diagnosed as being brain dead, and being kept alive. To “pull the plug” or stop a ventilator is an option that perhaps could be done, but there are so many other more exciting things that can be pursued, such as, organ transplantation or research. If one were to ask the question, “Who is Barney Clark?” most everyone would respond, “He was the first human being to receive a mechanical heart.” Wrong! There were at least five before him.11 In these five, diagnosed as brain dead, a beating heart was excised and a mechanical heart was inserted.

Should you be concerned about these matters? In Libertyville, Illinois, accident victim who was clinically dead for more than nine hours coughed while preparations were made to remove his kidneys.” In Milwaukee, Wisconsin, 13 as they were preparing to take the organs from a man who had suffered a heart attack, someone noticed a blink of his eye. In Nashville, Tennessee, 14 as they prepared to take the liver, the man moved his right foot, and as recently as February 6, 1988, the headline read,15 “Three Agents Shot in Drug Buy; 1 Killed, Another Brain Dead.” It would seem the person writing the headline distinguished between “killed” and “brain dead.”

Before 1968, a patient was pronounced dead by a physician who observed no circulation, no breathing and no reflexes. While these observations and criteria for pronouncement of death were not infallible, they were very reliable. The first article on brain death published in the U.S. medical literature was in the Journal of the American Medical Association in 1968.16 The title was “A Definition of Irreversible Coma.” Coma occurs only in someone who is alive, yet in this article irreversible coma was translated into brain death. This was done without reporting on any patient data. There were no animal experiments, nor were there any references to basic science literature. The only reference in the article was to an allocution by Pope Pius XII.

The law quickly became involved. In 1970,17 Kansas became the first state to have a cessation of brain function law. By 1986, forty-one states had either passed a law or had a judicial ruling accepting cessation of brain function as death. It took fifteen years for forty states to have a cessation of brain function law, it took only five years for forty states to get a death with dignity or living will law, and it took only two years for forty states to have a mandatory organ request law introduced. Incidentally, this law requires that a physician ask for organs for transplantation.

To study brain death, it is necessary to learn the meaning of certain words. These include living human being, dying, destined to die, prognosis, irreversible, vegetable (a human being is never a pumpkin or string bean), mortally wounded, criteria/action, cadaveric/cadaver, ventilator/respirator (while used interchangeably for the same machine, ventilator is precise and accurate since the machine only moves air, while respiration is the exchange of oxygen and carbon dioxide, and the machine does not do this), dead, cerebral death/brain-stem death, function/functions (loss of), structure (macro- and micro-), destruction, corpse/dead body/remains.

There is a unity or a oneness to every living human being. Each one has a body structure which is a composite of many organs. Some organs are grouped together as a system to carry out certain functions, for example, the tracheo-bronchial tree and lungs are included in the respiratory system, while the heart and blood vessels are included in the cardiovascular system. There is an interdependence of organs and systems. No one organ or system is in charge of all other organs or systems. The body, as well as the organs and systems, have certain environmental requirements in order to carry out their functions. A change in the environment can result in nonfunction. Nonfunction means idle and says nothing about the cause of nonfunction.

On the other hand, a corpse (dead body) does have loss of functions. In this case, the loss of function is more than simply being idle. There is structural change sufficient that the unity, the oneness no longer exists. No longer is there the capacity to function as one living body. A corpse is a dead body. More specifically, the body has disintegrated. What is left are the remains. A corpse suitably can be embalmed, buried, or cremated. The living organs in a so-called brain dead body are eligible for “donation.” However, a vital organ (i.e., one without which one cannot live) morally may not be taken before one is certainly and beyond doubt dead. Molinari wrote in the New York Academy of Science in 1978,18 “Prediction of a fatal outcome is not a valid criterion for accuracy of standards to determine that death has already occurred.” Even certain knowledge that complete collapse of the organism will occur in a few hours or days is not equivalent to knowledge that the patient is already dead. “So long as we are dealing with cessation of function, we are dealing with a living patient. If he happens to be dying, he is not yet dead.”19

Sometimes the answer can be obtained if the correct question is asked. A correct question to ask is: “Is this person dead?” Another question that gets interjected (consciously or subconsciously) is “May the ventilator be stopped?” This is a different question and one that is not being addressed at this time. Another question could be “May the still beating heart, or the liver, be removed from someone who is warm and has blood pressure, heartbeat, knee-jerk, ankle-jerk, and respiration (albeit on a ventilator)?” Or another question is “May research (lethal or sublethal) be performed?”

Now, if this human being is determined to be dead, WHICH set of criteria was used to make this determination? According to the booklet entitled, “Defining Death” by the President’s Commission,20 the studies that document adequacy of the criteria have followed one of two formats. 1) “Subjects who have met the proposed criteria demonstrate that in all such cases the heart soon stopped despite intensive therapy.” The reference given was to Jennett, et al., British Medical Journal 1981.21 Review of this article shows that they reported on 609 who were called brain dead and eventually the heart stopped, but 283 had the ventilator turned off. Thus, no one really knows what would have happened to these 283 if the ventilator had been continued. Perhaps a better reference could have been chosen, but then again, could this be the most supportive reference available? 2) “Other studies identify a group of subjects who met the proposed criteria and demonstrated widespread necrosis at autopsy, provided the body had remained on a respirator for a sufficient length of time for necrosis to occur.” The reference is, The NINCDS Collaborative Study.22 Thirteen percent of the patients on a ventilator for less than twelve hours had widespread destruction at autopsy. The largest percentage with destruction was 56 percent which occurred in patients who were on the ventilator for 96-120 hours. Even in patients on the ventilator for more than a week (greater than 168 hours), only 27 percent had widespread destruction of the brain. Is this the best reference to support this postulation?

Are brain-related criteria based on valid scientific data? The Harvard Criteria, published in the first article in the U.S. literature, included no patient data, no results of animal experimentation, and no references to basic science literature or studies. The Minnesota Criteria was published in the Journal of Neurosurgery in 1971.23 EEG recording was done on only nine patients, and two of these nine had brain-wave activity at the time they were pronounced brain dead. The British Criteria does not include evaluation of the EEG. It was stated in the British Medical Journal on February 14, 1981, 24 that the doctors in Great Britain were considerably influenced by the doctors in Minnesota. The largest study in the literature is known as the Collaborative Study, 25 out of which has grown the NIH criteria. Eight hundred and forty-four patients were entered into the study, but only 503 were included in the final report. Of the 503, forty-four did not die within three months. Autopsy was performed on 226. Ten percent had no evidence of gross pathology in the brain as evidenced by the eye of the prosector. Only 40 percent had a destroyed brain, thus 60 percent had something less than that, including the 10 percent who had no evidence of gross pathology. After all the data was culled and sorted, the NIH criteria were developed. An article in the Journal of the American Medical Association in 1977 concluded, “These criteria are recommended for a larger clinical trial.”26 To this day, this has not occurred.

Already, by 1978,27 there were more than thirty published sets of brain-related criteria for death. There have been many more published and unpublished sets of criteria since that time. Each new set of criteria is different and tends to be less stringent than the previous set. Furthermore, when a patient is treated with hyperventilation which reduces intracranial pressure, removal from such treatment to verify the presence or absence of breathing (apnea test) has the potential of increasing intracranial pressure-actually causing further injury to an already compromised brain. The apnea test results in acidosis (documented to be severe at times) causing or potentially causing more injury not only to the brain but also to all tissues and organs of the body.

A Gallup Poll28 published in January, 1985, showed that 93 percent of those polled had heard or read of organ transplants. Of these, 82 percent believed the person himself or herself must give permission to donate. (In fact, the opposite is true.) Seventy-three percent were very likely to grant permission to have a loved one’s organs donated. Forty-four percent were very likely to grant permission to donate their own child’s organs. Only 27 percent were very likely to donate their own organs upon death and only 17 percent had completed and signed a donor card. The reasons for not wanting to give permission to donate their own organs included: “They might do something to me before I am really dead”; “I’m afraid the doctors might hasten my death if they needed my organs”; and “I don’t like the idea of somebody cutting me up after I die.” These reasons were found in polls in the past. Many are concerned that death might be hastened; or another concern is the idea of being cut up after death.

A few comments about the laws, first the Uniform Anatomical Gift Act (UAGA), and then the Uniform Determination of Death Act (UDDA). The UAGA was passed in all 50 states in about 1970.29 It was set up for “…medical or dental education, research, advancement of medical or dental science, therapy or transplantation.” The UAGA:1) Carefully spells out ways to donate, but provides no mechanism to refuse; 2) Allows donation by survivors in the “absence of actual notice of contrary indications by the decedent”; 3) Allows donation by descending class to “any person authorized to dispose of the body”; and 4) Provides that donor “may make the gift after or immediately before death” [author’s emphasis added]. Especially when someone else is giving the permission, it is extremely important whether this is before or after the fact of death.

In Harbor City, California, in 1988, a 20-year-old man was found unconscious on the street.([0)] He was taken to an emergency room where he was pronounced brain dead within a few hours. Multiple organs were taken for transplantation, including heart, liver, kidneys, pancreas, femur, patella and Achilles tendon. This was done without notification of his relatives and obviously without permission from them or much less the young man himself. Some expressed concern and/or genuine upset by this action. The answer given by some was that it was within the law (the UAGA) to do this. It is within the law of every state for this to occur. Furthermore, the newspaper account stated that cocaine and alcohol were found by tests that were carried out. Both drugs can interfere with brain function and the evaluation of absence of brain function. But questions are moot for this patient after his beating heart has been excised.

In the United States all laws regarding brain death are couched in cessation of function, functions, or functioning, while the law in Norway calls for destruction of the brain. Thus, the word destruction is not foreign to Medicine or Law, even regarding brain-related criteria for death. The proposals regarding language of the law that could be adopted included that recommended by Capron-Kass (1972),31 the American Bar Association (1976), 32< the Uniform Brain Death Act (UBDA, 1978),33 and the UDDA (1980).34 One of the substantial differences in these laws revolved around the language of the medical standards required for making the determination. Capron Kass called for the determination to be based on “ordinary standards of medical practice.” The ABA proposal called for “…usual and customary medical standards,” the UBDA, “…reasonable medical standards,” and the UDDA., “ …accepted medical standards.” Recall the 16-year-old Charleston, South Carolina, girl determined to be brain dead without evaluation of the EEG. It would be “ordinary,” “usual,” “customary,” and “reasonable” to do an EEG, yet the doctors testified that it was accepted not to do an EEG. Legally, the doctors were correct. However, practically all physicians including neurologists know that an ordinary, usual, customary and reasonable way to evaluate the cerebral cortex is with the EEG. The clinical evaluations done at the bedside on a comatose patient test only brain stem reflexes, thus evaluate only part of the brain stem. The legal requirement is “irreversible cessation of all functions of… the brain stem.” However, it is “accepted” that this requirement has been fulfilled by observing only absence of breathing (apnea test) and absence of brain-stem reflexes, when, in fact, there are multiple functions of the brain stem not considered and clearly functioning at the time the patient is called brain dead. These include control of body temperature, central nervous system control of blood pressure, neurogenic control of heart rate, and hypothalomic – pituitary (trophic) hormonal control of thyroid and adrenal gland influence on maintaining temperature, blood pressure, water and salt balance. The standards required by the UDDA appear to be the weakest of all brain-death laws.

The UDDA, first published on May 23, 1980, states, “An individual who has sustained either 1) irreversible cessation of circulatory and respiratory functions, or, 2) irreversible cessation of all functions of the entire brain, including the brain stem, is dead. A determination of death must be made in accordance with accepted medical standards.” If one considers the scenario of the second part, that is, a patient has been determined to have irreversible cessation of all functions of the entire brain including the brain stem, by one or more neurologists, what is the clinical picture of the patient? He or she is on a ventilator. The color is normal; the temperature is normal; the heart is beating; the blood pressure is recordable; many of the internal organs and systems function; when the knee is tapped, the knee will jerk; likewise, when the ankle is tapped, the ankle will jerk. It is just a matter of time, whether hastened by vital organ excision or over a longer period of time until the first set of criteria will be fulfilled, i.e., there will be irreversible cessation of circulatory and respiratory functions. Then there would be no heartbeat, no blood pressure, no response to knee or ankle tapping. If the patient was dead according to the scenario presented first, did the patient become dead again in the second situation? Furthermore, these clinical situations are easily distinguishable by all physicians and most laymen. Yet, the law has made them identical and equivalent-a limit beyond the scope of the law. Easily distinguishable, different biological situations, cannot be made identical and equivalent, yet the law has essentially done so.

The UDDA establishes at law more than one concept of death. It is either 1) or 2), or both. Thus there are at least three concepts of death in this law. Furthermore, neither 1) or 2) is necessary. There are more than thirty different sets of brain-related criteria published in the literature,35 thus there are at least thirty-three ways to be dead according to this law.

There are no tests that show when the last portion of the brain has stopped functioning, or when that stoppage has become irreversible (except in the unusual situation of the head being crushed by a steamroller or the head being blown off by dynamite). It has been suggested that if there is a special need, then the law should read, “In extremis” or “almost dead” or “as good as dead.”36 Then, at least the public would be informed.

The option to determine death using older criteria will be effectively closed off. Be assured that an insurance company is not going to pay for continued care once the patient has been determined “brain dead. “ Even if a relative says, “I am not willing to accept that the one I love is dead when there are so many signs of life,” the insurance company will not continue paying.

Brain-death laws result in a more lenient standard for “harvesting” organs. Even the word “harvesting” is dehumanizing and depersonalizing. Corn, oats, and barley are harvested!

To clarify regarding organ transplants: this issue is not really about organ transplants, but rather use of brain-death criteria has become widespread because of organ transplants. Currently there is no way to do a heart transplant without cutting out a beating heart. It takes about an hour of operating, during which time the patient is paralyzed, the heart is beating, the blood pressure is recordable, and many of the internal organs and systems are functioning. Then the heart is excised. At the very least, one must question the morality of heart transplants. Even when heart transplants are considered immoral, this does not imply that one is unsympathetic to the needs of those with a failing heart. No matter the emotions, or the needs of others, or the good in the life of the recipient, it remains immoral to kill the defenseless, comatose patient.37

The cornea can be taken for transplant after death by almost anyone’s criteria. God made the cornea without blood vessels. The cornea requires oxygen for continued life, but the oxygen is supplied from the environment via the tears. Thus, even without circulation the corneal tissue continues to be suitable for transplant at least six hours after circulation has ceased.

Willard Gaylin wrote in Harper’s Magazine in September, 1974,38 “The problem of euthanasia is well on its way to being resolved by what must have seemed a relatively simple and ingenious method. As it turned out, the difficult issue of euthanasia could be evaded by redefining death.”

Realize: 1) To say someone with a beating heart, a normal pulse, a normal blood pressure, a normal color and a normal temperature is dead is false. 2) A cessation-of-brain-function law is not needed to stop a ventilator. 3) The transplant surgeon does not need a new law. Many transplants have been performed in Minnesota and other states without a law or judicial ruling. 4) If brain-related criteria are not based on valid scientific data, action that is taken results in killing. 5) Cessation-of-brain-function laws, if followed by living will and death with dignity laws, will all be a part of, or lead to euthanasia.

Conclusions: 1) To create the fiction of death for the anencephalic infant is as morally wrong as all other fictions of death that are already occurring. 2) The UAGA must be repealed or amended. 3) The UDDA is the weakest of all cessation-of-brain-function laws and must be repealed. 4) A person, including an infant with anencephaly, who is dying or destined to die, is still not dead. 5) A person with destruction of the entire brain (assuming it can be determined) is mortally wounded, but not yet dead. 6) Death ought not be declared unless the circulatory and respiratory systems and the entire brain have been destroyed, i.e., no longer having the capacity to function. While the lack of scientific validity for brain-related criteria exists and while there are serious flaws in the UDDA, the problems are not limited to Medicine and Law. These are a reflection of a society that has separated from the premise that human life is sacred, that life is a gift from Almighty God, and that each and every being is worthy of respect from conception until death,39 even when comatose and/or dying.